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It's a year since I got sick, it's starting to hit home ....(43 Posts)
on 25 November last year I visited a friend who was in hospital as her daughter was ill. Walking to the car later, I felt dizzy, but thought I was just tired.
It got worse, I couldn't get out of bed by mid December. We thought (and so did GP) that I had a nasty ear infection, I got antibiotics.
On Jan 2 I fell on the stairs, got taken in to hospital. Had several weeks of tests (I gave 17 blood tubes!), lumbar puncture, MRI, CT, pet, ultrasound, nerve conduction tests. By Jan I'd lost all sensation in my hands, feet and face, lost my balance, also my proprioception (position sense. I don't know where my limbs are if I'm not looking. I can't touch my nose or clap my hands with my eyes closed. I fall over if I close my eyes - or pull a top over my head!)
Tests came back - I've got something called CIDP - Chronic Inflammatory Demyelinating Polyradiculoneuropathy. Since Feb ive been in hospital every 4 weeks for an immunoglobulin drip, as it's a problem with my immune system - when I got the ear infection, my White blood cells attacked my own nerves instead of the bugs!
I'm disabled - have a wheelchair, a walking stick, a blue badge, get DLA.
I hate it. This has been a crap year, and it's slowly progressive even with treatment, so it's only going to get worse. Eventually I won't be able to walk at all. It will affect my voice (and I love to sing!) and eventually my breathing.
I'm just putting this out as a rant. I've got an amazing dh, 3 gorgeous children, a job I can still do and that I love. I don't want to be disabled. It's shit.
All I can say is that I'm here with you, on a similar journey running parallel, not the same, but with the same thoughts and feelings. You have to grieve because it is a loss, I'll stand here with you and grieve too, for you and me and all the others like us. And I'll stand here too when you're angry, confused, sore, sick. You aren't alone and you've got lots of us to talk to when you need it.
One thing I appreciate about my new place in life (other than the epic organisational skills) is my ability to appreciate the smaller things that passed me by before. The realisation that life is fragile, and fleeting in some way, makes me try to live in the moment, love my children and show it, not care about what people think when I turn up to school in my pyjamas and slippers, laugh about vajazzling my walking stick, do wobbly driving on my mobility scooter to make my DD laugh, and find others like me and try to give them a little bit of my strength to help them live in the moment too.
I'm sorry for your loss of health, it's a horrible tumble to becoming disabled, and coming to terms with it takes time. Perks are that you meet amazing people and the drugs are good. Big hugs. x
I'm using my stick in the house today, it's hard going. I'm in hospital for my IVIg drip on thursday, Friday.
Hoping I'll be ok on Christmas day. Last year I was bed bound, I'm hoping this year will be better!!
Keep yourself safe and don't do too much this week if you can help it, hoping the IV drip comes around quickly and you are feeling better soon.
weegie Sorry to hear you've had such a tough year, hope you have a good Christmas at home with your family.
<It's the loss of hope, of dreams that hits me hardest>
Me too. I spent my entire childhood planning towards a life of missionary service as a doctor somewhere warm, and then I got ill...
weegie Sending you all all all my love
Huge huge hugs. You sound so brave and fantastic. Nothing more to add but life is very cruel. X
Ah Weegie, you were so kind to me yesterday - and that in the midst of feeling crap. What a special woman you are.
I had a 2-3 year brush with what was supposed to be chronic, life-limiting illness (then I got lucky on a drug trial) and totally get how you're feeling. I remember buying and reading books, desperately trying to figure out how on earth others coped (I didn't have MN in those days, in fact I think it was pre-MN!).
All I can say is go ahead and grieve, and let all the wisdom and strength others can come up with bubble up and support you when you need it - you are clearly so, so good at giving of your own strength to others
Lots of love and happy singing from a fellow choir-lover: I shall cross everything for a healthy Christmas day for you xxx
But yet here i am getting kids out to school (owww my feet are so sore even though I can't feel them, phantom pain is shit).
Because I'm a mum, I just get on.
That's what we do, isn't it?
Another virtual hug and much love to you weegie. I was diagnosed with cancer at beginning of year (just after I had dd2) so have had to adjust to the shock of having a life limiting illness and shortened life. I completely agree with what kiwi says about having to grieve for your old life and adjust to the new. It isn't easy though.
gigondas I had 3 weeks while doctors played "hunt the tumour" as my symptoms can be caused by cancer, especially ovarian and breast. It was very, very frightening.
I hope you're doing ok? Sounds nasty. Life-limiting (I'll eventually not be able to breathe unassisted) is a horrible thing to have looming ahead of you. I know we all die, but until I got this, I was immortal!
I know it's a real adjustment to make isnt it (as it is not something I really thought about). I am doing ok but only just finished treatment in October for now so keeping my fingers crossed that no further change in cancer for a while. My whole year seems to have been doing tests/treatment etc which as you know is both physically and emotionally draining.
I'd never thought about it. I'm 41, my gran is in her 90s, still alive, so I suppose I'd never thought about death or much about being life-limited. I know with this I've still got at best 30-40 years, at worst 10-15. My children are 9,10,12. I want to see them grow up. I want to meet my grandchildren.
Adjusting takes time. Anniversaries are particulaly difficult. I am almost 4 years down the line with a milder disability but I get some pleasure (well sometimes) from finding ways (usually by family adjustments combined with technology) to join in things that looked closed to me. I do not know what the future holds for me so cannot know how hard it is for you but I was still in that shocked' inability to accept/looking for a fix' stage a year after I became ill. My mat GPs both lived into the 90s so before illness set in it had never occured to me either - why should it have- or for you? You post has reminded me to try to get back to singing - I am sure my now quiet voice will be welcome somewhere. My DH is away too, but I am in awe of you doing all that you do. As you say Mums just get on with it becouse we have too.
I'm sitting in the hospital waiting for my treatment to start. I've hardly slept in two days, I hate it in here, it's so hot and this time I'm going to have to sleep (or pretend to) to avoid the exceptionally chatty woman opposite me, who is doing my head in. I'm scared of hospital, I hate it with a passion, my blood pressure is already waaaay up, and I just want to go home, but I know I need this, my symptoms are bad.
Couldn't read and not post. I'm so sorry you're going through this, it's very unfair but you sound amazing - an amazing Mum too - and you will find a way to live with it.
I have a chronic illness which I've had for 24 years now - was undiagnosed for most of those years. I feel very cross at what I miss out on and how nobody understands how even doing the school run is an uphill struggle some days. But I have a lovely dh and dd and am blessed in many ways ( but not career/money/holidays!)
Hope your hospital visit is successful and not too stressful x
oooh maybe how are you ?? have missed you lots xxx (sorry for barging in on this thread)
i hate being on a ward too- can't relax or sleep properly. Nothing is right is it? hope your treatment goes smoothly dispite the garulous neighbour and you feel better for it.
Oh weegie, i hope you get some rest in hospital. Exceptionally chatty fellow patients (and staff) are the pits - and noisy TVs.
I too have a chronic progressive disease, having a flare up at present, and wavering more or less daily from wishing it would all just keep on progressing so i can escape this life i didn't really want (loss of plans, career etc) and feeling on a good day that it aint bad - and I love my family and don't want to hurt them. And that the 'reassessed future' is very much better than no future (I do know that is the correct answer, folks). It's so much harder when precious few others get what it's like. Till i got this I felt young and invincible - I came across serious illness daily at work but didn't think it could happen to me. Just always assumed it happened to others. Never thought about it really. Naive or what.
For you, weegie, it's very early days -a year is nothing in the adapting process i think. All the best.
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